Visiting the Mainland on Thursday, July 31, 2014

It does take a village to raise a child. We adore our village. We are endlessly grateful for our village, near and far. But truth be told, where SMA is concerned, we live on a tiny little island. A deserted island, in fact. Once a year we get to go to the mainland: the FSMA conference.

In June, we attended our fourth FSMA conference in five years, in Washington, DC (actually at the National Harbor in Maryland). We stayed in another ridiculously fancy hotel.

View from the balcony of our room!

Upon first arriving at the hotel, two days before the conference officially started, we ran into some FSMA friends and these four kids proceeded to chase each other around the fancy lobby, at FULL speed. They did circles around one of the pillars, with no care that well-dressed business people were coming and going. Wild, free, unhinged: childhood.

After the rollicking game of chase, we left the hotel to go have dinner with Nonnie, Oscar’s great-grandmother, who lives close by.

When it comes to SMA, we have always answered Oscar’s questions as he has asked them, and never provided more information than he has requested. He has heard the phrase “SMA” a thousand times around our house and certainly in doctors appointments, and he knows that we go to the FSMA conference every year. However he has never indicated, nor asked, whether he has SMA. In talking about his “condition” (for lack of a better word) he always says (as do we) that his muscles work differently than others and he is not strong enough to stand up, so he uses a wheelchair. On the car ride over to dinner that night, Oscar asked casually, “Do those girls have SMA, too?” In the privacy of the front seat, our jaws dropped open. That word, too, is what did it. It’s the first time he has verbalized having SMA. That he named himself a part of this group in this way. We never told him anyone else had SMA either, though just days prior we had been talking about how he probably knows more about his diagnosis than he lets on. We have always helped him find camaraderie with others in wheelchairs, others whose muscles also work differently. In some ways it is a relief, to know we can all talk a little more freely. To know we have permission to use the name, “SMA.”

This year the conference was all about Oscar. He is old enough now, and outgoing enough—and mature enough—that he jumped right in and met people left and right, and made lots of friends. Kids, teens, adults. People in chairs, people who walk. In previous years he has not wanted to go into the kids’ room, because they show movies there and they might be scary or inappropriate (his words). This year he kept saying, “I’ll go but I might not stay.” Oscar suggested David stay to watch the magician with him—and he did, for half an hour—then Oscar kicked David out! And Oscar couldn’t wait to go back the next day! He even watched parts of the Hot Wheels Movie, Shrek, and Little Rascals! And played Super Mario Brothers! All this in addition to doing a bunch of cool crafts, and hanging out with some new friends!

Stevie & Oscar socializing with Leslie, Karen, & Kat at the meet-n-greet the first night.

It’s hard to believe we had only met Stevie Hopkins (Director of Awesome from the 3E Love wheelchair heart company) once before—at the FSMA conference in Minneapolis, two years ago. We have kept up with him online though, and it was a thrill to see him again! A girl at the conference saw Stevie and Oscar talking and asked if Stevie was Oscar’s uncle. I think Stevie and Oscar were both equally honored by the suggestion, and we now call him “Uncle Stevie.”

We saw many familiar faces

Oscar and Sarah!

Oscar, Heather, and our friend Monica cruising the streets of the National Harbor.

and met many new folks

Scarlet (age 3) and Oscar became fast friends!

Oscar also became great pals with Gavin (Scarlet's brother who is just one month younger than Oscar). They had so much fun in the kids' room together, in fact, that Scarlet got a little jealous!

Oscar also made fast friends with the volunteers!

...and sweet Blaise...

and Claire and Lauren Gibbs (who started an amazing Facebook page: Humans of SMA. Check it out)!

As usual, Ghi Ghee came along to the conference.

In addition, this year, THREE of Oscar’s physical therapists came, too! His school therapist, Barb Flender

And his aqua therapists, Kat DiNicola & Karen Terp.

They all attended the day of continuing medical education conference that FSMA now offers, and also all came to some of the social events and/or part of the family conference as well. The conference seems to have made a lasting impression on each of them, and they all used the phrase, “next time” in one way or another, indicating they are each planning to attend again sometime. We are overwhelmed with gratitude for their presence. It means the world to us, knowing they, too, have visited our mainland.

This year, one of the sessions we attended was on breathing basics for type II. This is a session that happens every year, and we had not attended it since our first FSMA conference, four years ago. Then, we were terrified. The name “cough assist” sent shivers up our spines, and that was the most tame name of a respiratory support device in the session. Now, using a cough assist is as second-nature as brushing teeth. We were reassured as we sat through the session that we are doing all the right things.

Every year, for the last few years, the volunteers host a dance party. This year, part way through the evening, they played the limbo, and held up a feather boa as the pole to duck under.

They moved the boa to all different heights to accommodate everyone from kids in power chairs, to adults on their feet, to type I kids of all ages in reclined wheelchairs, to babies in strollers. The joyous energy was infectious, and I started to tear up as I watched these volunteers embrace every single person in the room as completely “normal.” There was just pure love and acceptance. Everyone was equal. David and Oscar went through the line a few times, having a blast. I honestly just stood there, overwhelmed with the beauty of the moment.

This conference is a gift. Despite the most amazing village we hail from, no one in that village can know first-hand what it is like to raise a child with SMA. We are alone in this way, in the day-to-day. But on the mainland, we can talk freely about sleep and our collective lack thereof, and laugh about it together. We can toss around acronyms like TLSO and biPAP and not have to explain ourselves—and we can trade tips about using each—along with a myriad of other equipment. We can commiserate about accessibility issues and celebrate the successes of our kids being fully included. We can watch with unleashed joy as our kids chase each other full-throttle through the hotel. We can be natives of the mainland for three full days each year. These three days allow us the room we need to breathe for the rest of the year. The reminder that we are actually not alone.

We are filled with gratitude for the amazing Families of SMA.

30 Days of Yoga for FSMA! on Monday, March 17, 2014

(photos from past FSMA conferences)

It’s been too long since we’ve written! Sometimes we’re just too busy living life to write about it…

My first experience with the organization Families of SMA was days after Oscar’s diagnosis when I timidly visited their website for the first time. I saw a photograph of two children from behind—a young girl in a power wheelchair with supports holding her head in place, and a little boy walking beside her, holding her hand. This photograph, at that time, made me sick to my stomach. Would that be my little boy? How soon would he not be able to hold his own head up anymore? Also, on that first brief and terrifying visit to www.fsma.org, I read the words, “Life with SMA doesn’t have to be any different,” and I got angry. Really angry. How dare they tell me that? My whole life has just been turned upside down and is quite different from anything I ever expected.

A few weeks later a large package was delivered to our door with an FSMA return address. By large I mean easily two-and-a-half feet high, wide, and deep. I was scared to open it at first. What scary things associated with this new diagnosis could be lurking in this box? But the contents were not scary at all: a bumbo chair, bubbles, nerf ball, squirt gun, jack-in-the-box, a dvd, and a handful of other toys.  I was dumbfounded that strangers in an office in Chicago had sent this box of gifts to our family. The generosity itself present in this offering meant more to me than the items, and indeed turned out to be symbolic of the nature of the organization.

Six months later, the three of us, along with my mom, boarded a plane to California to attend the annual FSMA national conference. We were like deer in the headlights arriving at the hotel where over a thousand others were also gathered for the same purpose. But there we met others who were living the same new normal as we were. We found a community that has become like an extended family.  Each year now, we look forward to the FSMA conference with great anticipation—a chance to connect with other families affected by SMA, and to learn from the top SMA researchers from all over the world.

Today, I can look at that same photograph that is still on the website and delight in the beauty, the independence, the love that is depicted (and incidentally that power chair the girl is driving is the same model that Oscar uses today). Also, I can find real truth in the words that first made me so angry. When we are able to openly embrace all that comes our way, indeed life doesn’t exactly have to be so different with SMA.

But what does all of this have to do with yoga, you might ask? My friend and colleague, Kristen Zory King, is doing a 30-day Bikram Yoga challenge to raise money for FSMA, in honor of Oscar. For those of you who don’t know about Bikram yoga, it is also known as “hot yoga” because it is done in a 105 degree room. The same 26 poses are performed twice during each 90-minute class. And Kristen is doing it! She’s 16 days into it already! Kristen is keeping a regular blog about her experience and she has an indiegogo page she is using to raise money.

Kristen, during last summer's Harry Potter Birthday party at Writers & Books! Always championing a good cause!

Kristen’s commitment to 30 days of yoga has inspired me. There was a time in my 20’s when I was attending Iyengar yoga classes twice a week. Now I can’t remember the last time I had an exercise routine. Hell, I can’t remember the last time I got any exercise that didn’t involve lifting Oscar. So, I have decided to take on my own yoga challenge this month. I am committed to completing a minimum of 4 minutes of yoga per day this month. Why 4 minutes? This is about how long it takes me to complete two rounds of sun salutation, and that is about all I can concretely commit to. And indeed 4 minutes of yoga a day is making a difference!

Kristen was worried that she set her fundraising goal too high at $500. She surpassed it less than a week into the challenge. I wasn’t surprised. My goal is to see how far beyond her original goal we can go. Double? Triple? Kristen has set some fun parameters for possible donation amounts ($20 vote of confidence, $30 dollar-a day, $52 dollar per pose, $105 dollar per degree). I’d like to offer up my own level of support, the Sally Special: $4 for a dollar-a-minute!

What really matters though, is spreading awareness about FSMA, and the way they are making a significant difference in the lives of so many. In addition to the incredible support they provide through care packages and the annual conference, they have also funded over $55 million in SMA research in the last 30 years. A million thanks to FMSA!

Kindergarten! on Friday, September 20, 2013

Oscar started kindergarten almost three weeks ago. He LOVES it! The first day we asked him how it was, and he said, “It was AWESOME.” And he has continued that same response every day.

Oscar is in a typical kindergarten classroom with 18 other children, one teacher, and a one-on-one aide. And it just so happens that a well-liked teacher from his preschool followed him to kindergarten to be his one-on-one! He attends five mornings a week, for two-and-a-half hours each day. His school runs on a 6-day cycle (meaning he has his special classes—music, library, and gym—on days 2, 4, and 6, rather than Monday, Wednesday, Friday—that way when there is a Monday or Friday holiday, no one is missing out on their special classes). Oscar has his PT and OT services after school on three cycle days, as well, so as not to pull him out of the busy kindergarten day for services. He just gets a half hour or an hour (depending on the day) tacked on to his school day. In addition, his physical therapist attends gym class with him, and his occupational therapist pushes in to his classroom one cycle day during work time.

There was a lot of preparation leading up to the first day. We had eleven visits/meetings at the school, that I can recall, between January and August. Some of these are visits that any child entering kindergarten would make: 1. Parent informational meeting, 2. Registration (dropping off paperwork), 3. Kindergarten screening day, 4. Meet the teacher and visit the classroom. The other seven were more specific to a child falling into the realm of special education with an IEP (Individualized Education Plan), or just more specific to Oscar himself: 1. An initial meeting with the school psychologist, who is also the chair of the Committee on Preschool Special Education and helps many families with transition (this was to start talking about classroom layout, toiletting needs, busing needs, etc), 2. A meeting with the school psychologist, Oscar’s new PT and new OT to start to lay a plan for his services, 3. A tour of the building with Oscar to get him familiar and to assess the accessibility of the facilities, 4. The CSE (Committee on Special Education) meeting to go over his IEP and address any needs for the coming year, 5. A visit to the playground with the PT to assess the accessibility of the playground and allow Oscar to become more familiar with his new PT, 6. A visit to demo a new stander for school, and 7. A team meeting (his teacher, his one-on-one, his OT, his PT, and us) the week before school started to go over final details before school started.

And this does not include the three times one or more personnel from the primary school paid a visit to Oscar’s preschool to observe him there, or the time his new PT came to our house for a visit.

We moved to Brighton, suburb just beside the city of Rochester, three years ago. Real estate in the Rochester area is cheap compared to much of the country. Taxes, however, are some of the highest in the country. And Brighton’s taxes are among the highest in the greater Rochester area. So far, as they have ushered us through preschool (Oscar did not attend preschool within the district, but the district oversaw the services he received through preschool), and now through the transition into kindergarten, every single penny of those high taxes is worth it.

The amount of care that has been taken in preparation for Oscar starting kindergarten has been incredible. Each person involved in this transition has asked us questions, listened to our answers, and followed our recommendations, except when they have come up with even better solutions themselves. Brighton tends to be known for their excellence, especially when it comes to children with special needs, and children who are bright. It appears that Oscar might fall into both categories, and so I think we have chosen the right district.

We have heard of other families affected by SMA who have sent letters home to parents in their child’s class at the start of the school year, introducing their child and family, and explaining the wheel chair, and what language might be appropriate to use. We brought this idea to staff at his school. They listened and then they asked questions. They wondered if calling attention to the wheelchair was really necessary. They are so adept at dealing with kids with all different kinds of needs that teaching diversity and acceptance is ingrained in everything they do. Oscar is Oscar. He uses a wheelchair. He’s still simply Oscar. It’s really a miracle that they are able to look at him the same way we do. To see the kid first, and the disability as secondary. And to teach that same open-mindedness to all the children at the school.

Dinner conversation has taken on new meaning since Oscar has started kindergarten. Often, he will sweetly ask each of us, “How was your day?” Then he will ask, “Do you want to hear about my day?” Each night, as a family, we look forward to hearing about Oscar’s adventures from kindergarten at the dinner table. He will often get partway through, and then ask enthusiastically, “Do you want to hear some more about my day?”

We know we are pretty lucky as, so far, Oscar describes his day in great detail to us, breathlessly recounting how he enjoyed center time—each day small groups in his class rotate to four different tables to do different activities, which might include pattern blocks, the geo board, an art project, working on a book, and even snack time! He is also quite enthusiastic about his specials: music, library, and gym. He loves recess and has mentioned seeing some friends he knows from outside of school on the playground. He loves the smart board and the ABC phonics song. And he has said about his teacher, “Mrs. Flaherty is the best.” Last Friday Oscar came home, nearly bursting at the seems with pride and joy, saying, “We did writing workshop today!” No surprise, the son of two writers…

Oscar is also making new friends, quickly it seems. He often comes home with stories about the kids who are in his center group (who rotate to each of the four centers with him), about what they are eating for snack, or how he and another child were naughty because they kept whispering to each other when they were supposed to be concentrating on a particular project. It feels like a real step forward. Prior to now, activities and play with other kids in his peer group have been so physical, and fast-paced, that it seems he sometimes got left behind—by no one’s fault (in fact the staff at his preschool was excellent at making sure he was included), just the simple nature of early childhood play. Not yet five, Oscar is one of the youngest kids in his class, if not the youngest. Now that he is surrounded by a slightly older peer group, with a slightly more structured routine, there seems to be a system established that allows him better access to friendship. This is very exciting!

We are looking forward to more kindergarten adventures as the year unfolds!

SMA Awareness Month: The Day-to-Day on Sunday, September 1, 2013

SMA Awareness month has drawn to a close. What makes the day-to-day of raising a kid with SMA different from the day-to-day of raising a kid without SMA? Since I’ve never raised a kid without SMA, I might not be the best person to answer that question, but I’m going to try. Also, the range of needs of SMA kids varies, I can only clearly speak to Oscar’s day-to-day. Some families have a much more complicated situation, and others less complex. So here we go…

When Oscar wakes up in the morning he calls out to us to ask if he can wake up. If it’s not a school day, he likes to play in bed for awhile in the morning. His bed raises up so he can sit right in bed supported. There is a control that he can work himself to do this. We bring him whatever toys he is requesting that morning, though we often have to remind him that he needs to  tell us all at once what he wants, rather than every three minutes requesting something new. Once he’s finished playing, we have to lift him out of bed to get his day started. Each time he needs to go to the bathroom we have to get his pants down, place him on the toilet, and stay with him the whole time. When he’s ready to sit at the kitchen table for breakfast (or drawing!) we transfer him to a high chair, not because his power chair can’t work at the table, but because the high chair is a little more compatible with the table.

When Oscar wants to play with a friend, most often he goes in his bumbo chair with the tray.

Because Oscar spends most of his day sitting, his muscles are tight, because they don’t move through a regular range of motion the way muscles of ambulatory people do. So, we have to stretch him, and a great way to do this is with knee immobilizer braces. The recommendation is for him to sleep in them so that he has an extended stretch, but we are not willing to mess with sleep right now, so we put them on him for extended reading or playing times on the couch.

Oscar also needs to go in his stander daily. The recommended time is a minimum of two hours. That is very difficult to fit in. During preschool he was getting 45 minutes to an hour during school time. This might be reduced at kindergarten, since kindergarten is a busier schedule. We try to get him in it daily at home, but if he has PT, aqua therapy, or if we have plans it can be difficult to fit that time in.

Oscar can still play in his stander, but he doesn’t have much independent movement. The stander is important for his bone development (as he bears weight in his stander), his respiratory health, and his digestive health.

Oscar has a daily respiratory routine that he has to do, cough assist machine and nebulizer:

The two machines together take about 15-20 minutes. In the summer he has been able to do “the dance,” as we’ve taken to calling the respiratory routine, just once a day. Soon, as flu season comes back, he will need to do this twice a day. And any time he is sick, the frequency increases to approximately every two waking hours, with cough assist being done as often as needed (Oscar’s weak chest muscles don’t allow him to cough strongly enough to clear any secretions from his lungs).

Once every two to three nights we have to remember to plug Oscar’s chair into the battery charger so he can still get around!

In addition to all the equipment, Oscar has physical therapy 4-6 times per week, depending on the week. About half of that happens at school, with the other half happening at our home or at CP Rochester in the therapy pool. He also has occupational therapy 2-3 times per week at school. All of the other meetings and appointments are spread out enough that I wouldn’t consider them part of the day-to-day, but I would say we (with him sometimes included) have around 30 meetings per year to go over his services and/or needs for school and home, and we have an average of maybe 20 or so doctor’s appointments per year, in a year without any major complications.

Despite all this, most of the time we just look at Oscar as a normal kid. He does all the things a typical almost 5-year old does, just in his own way.

Since it is SMA Awareness Month, we’ll ask again that you please consider sharing this blog post, and our web site with others. The more we raise awareness, the more thoughtful people can be about accessibility and acceptance.

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